Coronavirus (COVID-19) and epilepsy

Scroll down for the answers to frequently asked questions on Epilepsy and COVID-19

Coronavirus FAQs

Virtual groups - a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment.

Virtual groups

People with epilepsy are included in priority group 6 of the COVID-19 vaccine roll-out.

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Last reviewed 22 March 2021

Does having epilepsy put me at increased risk from coronavirus?

A recent study published in the British Medical Journal suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from coronavirus. The study does not show whether epilepsy itself causes this increased risk, or whether the risk is linked to other factors that could affect people with epilepsy. For example, people with epilepsy may be more likely to be in residential care, have visits from carers or have other conditions alongside their epilepsy. These things could increase their risk of catching or being more severely affected by coronavirus.

This small increased risk does not mean you need to shield yourself, unless the NHS has advised you to. But it is important to keep yourself safe by following guidance on social distancing, washing your hands and wearing a face mask if you are able to.

Are people with epilepsy being added to the clinically extremely vulnerable (Shielded Patient) list?

Epilepsy is not on the list of conditions that make people extremely clinically vulnerable (also known as the Shielded Patient List). This means that most people with epilepsy have not been advised to shield.

The NHS in England has recently added some people it believes are at higher risk from coronavirus to the Shielded Patient List. To decide which people are at higher risk, the NHS uses a risk assessment tool called QCovid®. QCovid® uses information about a person including their age, weight, ethnicity and medical conditions to estimate their individual risk of being admitted to hospital or dying with coronavirus. 

Some people with epilepsy could be identified as being at higher risk by the QCovid® tool. If you are identified as higher risk, the NHS will write to you to let you know. You will be added to the Shielded Patients List and will also be offered a COVID-19 vaccine as soon as possible.

The government website has information about shielding, including advice on going to work and getting support.

NHS digital has more information about the QCovid® risk assessment tool.

Do people with epilepsy have priority to get the COVID-19 vaccine?

The Joint Committee on Vaccination and Immunisation (JCVI) has issued advice on who should have priority to get the COVID-19 vaccine in the UK. The advice says that people aged 16-64 with epilepsy should be included in one of the priority groups. The priority groups are:

Group 1

Residents in a care home for older adults and their carers

Group 2

All those 80 years of age and over

Frontline health and social care workers

Group 3

All those aged 75 and over

Group 4

All those aged 70 and over

Clinically extremely vulnerable individuals (not including pregnant women and those under 16 years of age)

Group 5

All those aged 65 and over

Group 6

People aged 16 to 64 with underlying health conditions which put them at higher risk People with epilepsy are included in this group.

Group 7

All those aged 60 and over

Group 8

All those aged 55 and over

Group 9

All those aged 50 and over

In England, people in group 6 can now book their vaccination online. In Northern Ireland, Scotland and Wales, the NHS will contact you when it’s your turn to get the vaccine.

Read our statement confirming that people with epilepsy are in group 6.

I'm an unpaid carer for someone with epilepsy. Do I have priority to get the COVID-19 vaccine?

The JCVI says you should be prioritised for the vaccine if you receive Carer's Allowance, or you are the main carer of someone elderly or disabled whose welfare would be at risk if you fell ill. If either of those things apply to you, you will be in group 6 (see table above).

This applies to carers aged 16-64. If you are aged 65 or over, you will be in one of the higher priority groups due to your age.

Are the COVID-19 vaccines safe for people with epilepsy?

The Association of British Neurologists says all COVID-19 vaccines are safe for people with neurological conditions such as epilepsy. The COVID-19 vaccines approved for use in the UK have met the strict safety standards set by the Medicines and Healthcare products Regulatory Authority (MHRA). So far, millions of people have received a COVID-19 vaccine and reports of serious side-effects, such as allergic reactions, have been very rare.

COVID-19 vaccines are not expected to interact with epilepsy medicines. This means the vaccine should not affect how your medicines work, and your medicines should not affect the vaccine.

Like other vaccines, COVID-19 vaccines can cause mild or moderate side-effects including fever. Not everyone will get side-effects, but if you do, most will go away after a few days. For some people with epilepsy, fever can make them more likely to have a seizure. If you are concerned about fever, the International League Against Epilepsy says that taking a fever-reducing medicine such as paracetamol for 48 hours after you have the vaccine reduces the risk. For most people, the risk of serious illness from COVID-19 infection far outweighs the risk of side-effects from the COVID-19 vaccine.

The MHRA has more information about the vaccines approved for use in the UK.

If I catch coronavirus could it trigger a seizure?

Some people with epilepsy are more likely to have a seizure when they are unwell, particularly if they have an illness with a high temperature (fever). Fever is a symptom of coronavirus, so this could trigger seizures for some people with epilepsy.

The best way to protect yourself from having a seizure is to keep taking your epilepsy medicine as usual throughout any illness. If you do get a fever, the NHS says you can take paracetamol or ibuprofen to help bring your temperature down. Both are safe for most people with epilepsy, but check with your pharmacist that they don't interact with your epilepsy medicine.

For most people with epilepsy, a seizure is not a medical emergency and does not need hospital treatment. However, if you are at risk of status epilepticus, make sure you have an up-to-date emergency care plan from your epilepsy specialist. This should tell you and the people around you what to do if you have a seizure and when to call an ambulance.

Are face coverings (face masks) safe for people with epilepsy?

Most people with epilepsy can safely wear simple cloth face coverings. A face covering made of breathable material should not cause any harm if someone is wearing one during a seizure.

Some people have told us they are worried about face coverings making it harder to breathe or making them overheat. There is no evidence that this is a problem with the type of face coverings recommended for the general public, made of breathable material.

If you find that wearing a face covering makes you feel uncomfortable or anxious, it’s worth trying different ones to find one that’s right for you. The gov.uk website has advice about what counts as a face covering. You could also try wearing a face covering for short periods of time at home first, to get used to the way it feels.

If you have other conditions as well as epilepsy and are worried these may affect your ability to wear a face covering, you may wish to check with your doctor. Or you could get advice from a charity that specialises in your medical condition.

Do I have to wear a face covering?

There are some places where, if you can wear a face covering, you must wear one by law. These places include on public transport and shops. You can find out more about the rules in different parts of the UK on the government websites:
England
Northern Ireland
Scotland
Wales

Evidence shows that wearing a face covering may help stop the spread of coronavirus to others. So it’s important to wear one if you can.

There are some exemptions to the rules. For example, you do not have to wear a face covering if doing so would cause you severe distress. If you are unable to wear a face covering there is no requirement to prove you are exempt. But if you would prefer to show something, the gov.uk website has printable exemption cards.

I’m worried about catching coronavirus at work but my employer says I have to go in. What can I do?

Depending on the part of the UK you live in and the type of work you do, your employer may be able to ask you to come to work. However, they should take steps to protect you at work and make sure your workplace is safe. The different governments of the UK have each issued guidance on working during the coronavirus pandemic:
England

Northern Ireland
Scotland

Wales

Your employer should tell you what steps they are taking to keep you safe at work. If you don’t feel safe being at work, talk to your employer about your concerns. In some cases, they may be able to help you work from home or make other reasonable adjustments. If you don’t feel they are doing enough to make the workplace safe, you can report this to your local authority or the Health and Safety Executive.

ACAS can give advice about your rights at work. They also have information about coronavirus and work on their website.

If you have been advised to shield, the government says if you cannot work from home you should not attend work. Your employer may be able to furlough you, or you may be able to claim Statutory Sick Pay (SSP) or Employment and Support Allowance (ESA).

Do epilepsy medicines stop the immune system working well?

Standard medicines used to treat seizures, known as anti-epileptic drugs, do not suppress the immune system.

A small number of people who have epilepsy as part of a syndrome or other medical condition, may be prescribed medicines that can weaken the immune system. These include steroids and everolimus, a medicine taken by some people with tuberous sclerosis complex. If you are taking these medicines, speak to your doctor for advice.

Will the situation with coronavirus lead to shortages of my epilepsy medicine?

The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. If we find out about any shortages of epilepsy medicines, we will post these on our Drugwatch webpage.

My child has epilepsy. Are they at increased risk?

If your child has epilepsy alone and no other health conditions then they are unlikely to be at increased risk from coronavirus. In general, children appear to be less severely affected by coronavirus than adults. But if your child has complex epilepsy or other conditions alongside their epilepsy, you may wish to ask their doctor or epilepsy nurse for advice.

How can I get support while self-isolating?

You’ll need to stay at home and not leave home for any reason (self-isolate) if you or someone you live with:

You'll also need to self-isolate if you've been told to by the NHS Test and Trace service.

The NHS has issued advice about self-isolating including how long to stay home for. In addition, if you have epilepsy it’s a good idea to think about:

Getting food and medicine

While self-isolating, you should arrange for food and medicine to be delivered to you, or ask friends, family or neighbours to collect it for you. Check with your local pharmacy if they offer a medicine delivery service. If you usually collect your prescriptions from your doctor's surgery, you could ask if they can be sent electronically to a pharmacy of your choice instead.

If you need help getting food or prescriptions while self-isolating, here are some sources of help:

Keeping in touch

If you live alone, keep in regular contact with friends, family members or neighbours while self-isolating. You could ask them to contact you regularly by phone or text to check you are ok. This is especially important if you have uncontrolled seizures.

Look after your emotional wellbeing

You may be feeling anxious about coronavirus or your epilepsy. Our information on wellbeing may help. You can also find information about looking after your wellbeing and coping with anxiety related to coronavirus from Mind and Anxiety UK.

Neuropsychologists Professor Gus Baker and Professor Steven Kemp have written an article on surviving the COVID-19 pandemic from a psychological perspective.

Coronavirus - our support for you

Epilepsy health services and COVID-19

Code: 
F161.25

Epilepsy Action would like to thank Dr Rhys Thomas, Honorary Consultant in Epilepsy and Intermediate Clinical Fellow at Newcastle upon Tyne Hospitals NHS Foundation Trust, for his contribution to this information.

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